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February 08, 2004

Conjoined twins: Conjoined Twins: Tragedy and Joy - twins with two heads and other treatment dilemmas.

Should doctors decide (or parents or lawyers in courts) whether one should die so the other conjoined twin can live? What are conjoined twins? Two heads on one baby. Moral / ethical issues and debates.

Conjoined twins (or Siamese twins) are often in the news, for example this week following the tragic death of a baby called Rebeca Martinez in the Dominican Republic, born with a two heads - joined at the skull - after doctors operated to remove the additional face, brain and other structures.

We saw another tragedy in 2000 following the arrival in the UK of distraught parents from the Maltese Island Gozo, seeking specialist surgical help to separate their two newborn babies, Jodie and Mary. Pediatric surgeons at St Mary's Hospital in Manchester had no experience of separating conjoined twins but feared that unless they acted fast, both would die. The parents were told that despite appearances, Mary's internal organs were so poorly formed that she could not survive without being joined to Jodie. The parents of the conjoined twins refused an operation, and the case was heard in court. The Judges ordered that the operation should go ahead..... but.....

What are Conjoined Twins?

Conjoined twins are formed from a single egg which develops into two almost separate balls of cells. In normal twinning, each ball becomes an identical twin. As a result cells in conjoined twins become confused about where they are in the body - indeed which of the two conjoined twins they are actually in.

In normal embryo and foetus development every cell knows where it is in the body because the neighbours produce chemical messages. So a skin cell knows not only it is skin, but that it is - say - nose skin, rather than chin or ear or lip skin. In conjoined twins these chemical messages don't work properly - how can they? The end results can be very bizarre: a single organism with two heads, two hearts, four legs and arms - or is that single org"

I once was present in the labour room when a child was born with two heads - yes two heads - on a single set of enlarged shoulders. conjoined twins or just another major abnormality? So then. you can't label all conjoined twins the same. There are huge variations in the degree of joining. Some are born with two bodies and one head for example.

In the case above, the two headed child / conjoined twins was / were stillborn. But what if it / they had stayed alive? What if we had landed up with two thoughtful conjoined twin brains on the same body - perhaps only one actually in control of movements below the neck?

Strangely enough, a surgeon has made an artificial conjoined twin of a monkey, onto which a second head was transplanted. (See video).

The moral debate on separation of conjoined twins

In fact the situation with the conjoined twins in the UK was in a way quite similar. Although at first sight each appeared to have a separate well formed body with some joining at the lower body, detailed tests showed these conjoined twins were very unequal - one was providing the heart, lungs and many other basic functions.

The other conjoined twin was very poorly equipped for separate life. To make matters worse, these conjoined twins, Jodie and Mary, were also to some extent mutually dependent. If separated, the stronger and more capable conjoined twin (Jodie) would need huge amounts of surgery over subsequent years, and was likely to suffer significant handicap.

The parents came in a hurry to the UK because they heard that Britain was expert on the management of conjoined twins, hoping no doubt that both could be separated with few long term problems. The long court battle was decided with doctors being given the right to cut off the weaker conjoined twin, thereby killing Mary, to preserve the life of Jodie - against the parent's wishes. They felt that if the two could not be safely separated then they should be left together and nursed with loving care until natural events took over. Some doctors said that both would soon be dead in that case. Others said that these two conjoined twins could survive far longer with good basic care.

Doctors have second thoughts on separation of conjoined twins

Of course, once the court battle was won by doctors, they began to have second thoughts. It is a brave doctor indeed who is willing to take the knife to two conjoined twins, both of which are at that point alive and growing, and see perhaps both conjoined twins die in the operating theatre or very shortly afterwards. Easier to go ahead if the parents want their conjoined twins separated and understand and accept the risks - but what if you have had to force the whole thing on them in the first place?

And there is another issue. The survivor of these conjoined twins would need huge care efforts and community support. The parents said this was unlikely in their own culture.

A fundamental problem in conjoined twin decisions is that the parents themselves may not always agree, they may each feel differently on different days. It is common for parents to feel somehow that the birth of conjoined twins is their fault, or to blame each other, doctors, society or God. The natural joy of birth has been replaced by overwhelming grief for the loss of what might have been - in this case one or two perfectly normal children. This is a hard place to make life-changing decisions about conjoined twins management.

Doctors should treat with great care

My own view, on balance is that doctors should tread with great care when parents are refusing certain treatments for their children, where the outcome of successful treatment is likely to be severe handicap and loss of quality of life. It is a human right for any human being to refuse medical treatment, and it is the responsibility in the case of children for parents to take those decisions on behalf of their children. In this case the fight was because some doctors disagreed with the parents and wanted to take that responsibility away.

But these parents had come to the UK in good faith, seeking advice on the management of conjoined twins. They did not expect to find themselves imprisoned in the country, forbidden to take their children back home, and forced to take that advice, when they believed it to be morally wrong. Their conjoined children were essentially kidnapped by court, and imprisoned against their parents' will in the UK. That does not sit comfortably with me.

Medicine gone mad

Too many times I have seen medicine gone stark raving lunatic mad with aggressive over-treatment and stupid decisions. Even the Catholic church, traditionally the most conservative in these matters, has taken the position that doctors should not strive officiously to keep someone alive. This is a common issue in the care of those dying of advanced cancer. It was in keeping with this that the Vatican offered a safe refuge and hospice care.

Here is a strange irony: if mother had arrived a day before going into labour, under existing UK law doctors could have killed the conjoined twins in the womb and then forced a labour and buried or cremated them without any fuss whatsoever. The UK has one of the laxest abortion laws in the world. But the moment these two conjoined twins were born, the world began to worry that every possible effort should be used to at least keep one alive.

It would be far safer for the future of humanity if we meddled less, and allowed nature far more room to take its own course, neither slaughtering babies in the womb just hours or minutes before birth, nor going over the top to fight for life at all possible costs after birth.

* The Siamese name often used for conjoined twins comes from the well known twins Eng and Chang born to Chinese parents in Siam (now Thailand). The first surgical separation of Siamese twins was in 1953.